Fight HD Blog
We are in this fight together"

USAT Article Alive! Won Age Group!



OK, the USAT article has come out!  Please look here

I want to thank them for publishing the story, and it has really generated some interest. 

So, update.  I am very ready for Ironman CDA in June.  Last weekend I had 122 miles on the bike on Saturday and 20 mile run on Sunday, and I made it through in flying colors.  I am still amazed at how fit I am this year, and how hard I have been able to push myself.  I have gone beyond my comfort zone and right now it is really paying off.  Three weeks ago, in my first international distance, I won my age group.  I have won my age group in sprints before, but this time it feels a little more real, given the distance.  Perhaps…Nationals!?


Healthy Kick-Start

I wanted to keep this quite for a little while, but I have decided to “clean” my system for the past couple of weeks.  I am going into my final race of the year in a few weeks and I wanted to lean up a little more and go in as fit as possible.  So, I changed up my diet a little bit to make sure I was not eating processed sugar or taking in anything that I shouldn’t be (excess caffeine).  The first few days were a little rough when you are used to your morning jolt, but after I got over that hump, I must state “I have not felt better, more clear-headed in a long time.”  My sleep patterns are great, and so are my general feelings throughout the day. 

So, why should you care?  Well, it again goes to show how diet can really affect your overall welfare.  As people with HD, or who are at risk of HD, we know how important diet is, but I think a lot of us may fall short of following what we should be eating.  Even I have had my little vices, and that is OK.  We can’t be perfect.  But the closer we come to a healthy diet, the more our body is going to react in a positive way.  We can do all the physical exercise we want, but until our diet is aligned, we are missing something key to our health.   Can you be perfect at once?  Probably not, but if you change things a little at a time, and keep challenging yourself to be healthier, you will see extremely positive results.  The more you are reinforced by being healthy, the easier it becomes to change some of the bigger things.  The more things you change, the better you will feel.  I promise! 

Mental Focus

So, this season really has not gone the way I had hoped so far.  I am really fit, probably more fit than I have ever been in my whole life, but during races, things just haven’t come together.  Perhaps I am putting too much pressure on things, or I have had just some freak, weird things happen.  It’s amazing what the mind can do to you!

At the end of last year, I had this overriding dread that I was imminently doomed.  That somehow I was going to wake up the next morning and HD would be at my doorstep.  Every sudden movement, every tickle, prickle, whatever, I was thinking the worst.  This drove my concentration to a minimum and also created other phantom issues.  This definitely caused some lackluster performances.   At the end of the season last year, I swore that I was not going to go down without a fight and that I was going to focus on the good.  I began this season with a fresh mind and body.  First race I got sick before hand, second race was an OK race, and then the last 3 I just had some weird unusual things happen.  So, whatever the case, you can learn from things, and then you have to move on.  So, that is what I am doing.   I am working on my final weeks of work for the 08 season.  I will be doing another Half-Ironman, and regardless of the disappointments this year, I look forward to finishing on a high note.  It’s funny, at this time of the season I am usually tired, broken down a little bit, but right now I am super-pumped for this final race and mentally focused.   Whereas last year I focused heavily on HD at this time, I have put it on the shelf, and am doing much better.  It just goes to show you that many times having problems focusing mentally will affect you more that anything else.  In order to be physically fit, one must be mentally focused.  Otherwise, no matter how much you work, you won’t get very far.

Race Results

Well, I always anticipate the worst at the Lubbock Half-Ironman, but who would have thought that it would be rainy, windy and cold in June!  Things did not go “as planned.”  Reports said that the wind was 20 MPH sustained and up to 40 MPH wind gusts on the bike.  I am not too sure about that but it was a long day!  Given that I was riding a disc in such weather, it felt like I was riding with a parachute on.  That is a lot of surface area the wind can catch hold of.  So, my excitement of having the first big race of the year was somewhat tempered.  Yet, I also like to look on the plus side.  My swim was a personal best at that distance, and my run came on strong at the end of the race.  So, only my bike and the beginning of the run needs to be fixed.  So, what next?  Going to make a couple of tweaks to my riding and running and I should be ready to go for the next race in a few weeks.  Good thing is, I think the bike was just due to bad weather and not a major overhaul.  It also gave me insight as to what needs to be changed, so I feel a little more focused now.

What was the major positive though?  It was the first major race the FIGHTHD uniforms were worn, and we got some great feedback!  They looked good and they worked great.  I am going to try and upload some pics to the website so everyone can see them in action.  Plus, even with the weather, one of the team members had a great day.  So it is always good to see the pay-off when people work hard.

Finally, I am officially registered for my next full distance Ironman in 2009.  I am looking forward to it, I will keep you posted!

First Big Race

Wow, can’t believe my first big race of the year is upon me in Lubbock at Buffalo Springs!  I have raced a couple of months ago, but this is my first long race.  An excitement is in the air.  First, we are unveiling the new FIGHTHD race kits (Jerseys, Shorts) in a race.   How exciting is that!  We have gotten such positive feedback from everyone who sees them and I know that I and others have gotten a lot of questions about the jerseys.  We will be wearing these in a big race too (70.3 series race), so that is big too.  Second, this is a race I truly enjoy.  It is a very difficult race and I always look forward to the challenge.  A lot of people just want to race fast courses, and I understand that, but this is what some of us got into Triathlon for.  This race will test our resolve both physically and mentally.   Finally, although I am not tapering for this race as it is not my goal race, I feel pretty good and am excited to test my fitness.  Things have been going well as of late and training has been very strong.  The thing about Buffalo Springs though, is that ANYTHING can happen.  Last time I was out there I felt great, had a very fast swim, a good solid bike, and was moving on the run until I was 3 miles left.  I was feeling good and ready to turn it on.  Suddenly, things started to shut down and I ended up in the medical tent once I finished (I still had a personal best on the course by 20 minutes).  This year, who knows?  I have changed up a lot of things in the past year, and I seem to be taking well to it, but you never know until you put yourself into a race situation. 

So, if your at Buffalo Springs in Lubbock this weekend, look for us.  We will be racing the 70.3 series (1.2 mile swim, 56 mile bike, 13.2 mile run)!

Father's Day

So, this year Father’s day kind of crept up on me.  My father passed away many years ago from HD, so it has not crossed my mind in a long time.  My wife asked me what I thought about on Father’s Day and to be honest my question was, “It’s just another day.”  When he had HD, we always celebrated it, but not in a grand way.  My family just wasn’t really into things like that too much, and I was also pretty young and not really clear on what days like that really mean.  Now that I am older, it has become clearer just what Father’s Day means for some people and unfortunately, I do not have the opportunity to celebrate as I would like.  Like most years, this year it kind of came and went uneventfully, but for some reason this morning it hit me harder than usual.  I think it was listening to Tiger Wood’s Press Conference and them asking him what his father would have thought about his winning of the U.S. Open.  It got me thinking “what would my father say about me?”  You see, unlike Tiger, or anyone who had a lot of interaction with their father, my father started to develop HD when I was in 5th grade.   Although he was still a very strong presence in my life, he had lost the ability to communicate as well as he would have liked within my formative years.  In other words, I lost his voice a long time before he passed away.  So, sometimes I think, “what would he say about me, what would his voice even sound like?”  I know he was proud of us, and he cared deeply for us, but it’s hard to not look back and wonder what he would say now, at this time in our lives.  I guess I will just have to wait till I see him again to get that answer….

Jerseys Make Debut!

I am so happy to announce that we received the first shipment of the FiGHTHD jerseys and there were several sightings out on the road.  They look sharp and perform great.  There has been some really positive feedback.  I was riding by myself and on several occasions other riders came up to me and asked me questions.  This weekend I was running and I saw one passing me. 

Why is this exciting?  Because we are getting people to ask us, “What is HD”; and our first year goal is really to just get the word out and start getting people to ask and educate themselves about what HD is.  I know in the last six months I have had many go to the website and begin educating themselves on what HD is all about.  Furthermore, on a personal level we really have some GREAT ambassadors right now.  Everyone wearing the jerseys are excited about them and it shows!  I couldn’t be more grateful. 

We have also been getting inquiries about where people can get jerseys.  So, it looks like another order is forthcoming.  So, please contact me if you need one ordered for you!  We have cycling shorts and jerseys, tri-shorts and jerseys, and run singlets.  All look very sharp and the material is excellent. 

So, look for the jerseys out there on the road and don’t be afraid to talk to anyone wearing them! 

Finally, on June 29th  the jerseys will be making their official inaugural race at a Ironman 70.3 series race! 


GINA Passed in Law!

Yesterday, the President signed into law the Genetic Information Nondiscrimination Act of 2008 (H.R. 493) or GINA.  For more information, click here.  Of course, there was overwhelming support from both the House and the Senate.  GINA makes it illegal for insurance companies and employers to discriminate against individuals based on their genetic information, making it one of the most important civil rights acts signed in the 21st century. 

What does this mean for HD?  In the past, those at risk who wanted to get tested had to be very careful and many times did not get tested at all because of the ramifications of not being protected.  Those with HD must rely on insurance in order to have quality of life and the fear of being rejected from this insurance as well as being discriminated from by their employers have kept them in the dark.  How strong is this?  Well, this blog is anonymous isn’t it?  

Does this mean I expect to “come out” and for others to not feel this fear now that the law is passed?  Well, not so fast.  It is still important for those at risk (and those pre-symptomatic) to shore up their insurance before they get tested.  This includes Health, Disability, Long Term Care and Life Insurance.  The early you get your insurance and the healthier you are, the cheaper these premiums are going to be.  Also, although this law has passed, it will not take into effect for 12 months for health insurance and 18 months for employer protection.  So, be careful, be smart and protect your family.  However, now that GINA has passed perhaps some of us can become a little braver and get HD out there!

Passing of an Uncle

I received a bit of bad news this weekend.  After 23 years of suffering from HD my uncle has passed away.  To tell you the truth, I have mixed feelings about the whole situation.  You see, my grandmother had 5 children and my grandfather left her while they were all still growing.  They say she had a nervous breakdown and all children were shipped off to separate relative’s homes, including my father who ended up in an orphanage (I tend to think perhaps my grandmother’s HD was probably in play at the time).  So, all 5 children were scattered to the wind.  I knew one uncle well, but the rest I really did not have contact with including the uncle with HD.  As far as we know, he and my father were the only 2 children to have HD and they both had a late onset (around 55 years old).  Why the mixed feelings?  Sadness because another one in my family had to suffer from HD, but in truth, a little bit of hope.  You see, my uncle died at the age of 78!  For anyone that is a good long life!  How did he do it?  What I do know of him, was that he was very strict with his diet, ate very healthy and exercised religiously.  He was active in every possible way.  Do I think this means that if you do these things you can assure you have a late onset and live a full life with HD?  Not at all, but it is again another piece of evidence that environment can have an impact on this disease.   It also flies in the face of those who say that there is nothing to tell their kids when they are at risk with HD, they have no comfort.  The man lived a full life and had HD. Others can too.


So, as I set out to run this morning, as I thought of my uncle, my pace picked up and soon I was running blissfully through the woods to an unknown future were anything is possible and anything can happen.  


This Easter, I stepped into the church that I grew up in.  It doesn’t sound like a big deal, but when you consider I have not been back that many times in a very long time, memories seem to overwhelm you.  This time, I got back to thinking about the funeral I attended there many years earlier, which was my fathers.  I distinctly remember the chapel being packed, with all of our friends and family.  It was an April afternoon, crisp and clear and my favorite pastor was officiating.  He spoke of how my father met my mother, and what he thought of his boys and the usual things a pastor can sometimes say at a time like that.  However, one thing the pastor said, has stuck with me all these years.

“No matter what this man had been through in his life, he was always the first one to say God Bless you, even when he could have been understandably bitter about his lot in life.” 

My father rarely missed church, and he was rarely seen without a bible.  Even when he was too sick to stay with us at the house anymore, and I would visit him, he was reading his bible.  I wonder sometimes, will I be able to be as strong-willed as my father?  I only pray that I never blame God, that I accept my lot in life with the same grace, and dignity that my father did.